title: Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom.
abstract: OBJECTIVE
  To identify the nature of services for children and young people with progressive neuromuscular disorders (NMD) provided by Children's Hospices in the UK.
  
  
  METHODS
  A questionnaire requesting aggregate data on the number of patients with a neuromuscular condition was sent to all children's hospices in the UK, in addition, specific data was collected on services for young people with DMD presenting to a single local hospice.
  
  
  RESULTS
  87% of eligible hospices responded (27/31). 756 young people with an NM condition were being cared for by the hospices. These patients accounted for a mean of 17% of the total hospice population (range 5-35%). The age at which young people were required to leave the children's hospices varied from 18 up to 35 years. 73% of 'visits' were described as 'planned stays'. Although 'end of life care' is provided, few young people with NMD died in a hospice.
  
  
  CONCLUSIONS
  Children and young people with NMD form a large proportion of the Children's Hospice's caseload. Many valued services provided by children's hospices are not available through NHS funding. The lack of similar adult based services is a concern as increasing numbers of young people are surviving into adulthood.
authors.affiliation: Paediatric Epidemiology Group, Centre for Epidemiology and Biostatistics, University Of Leeds, Level 8 Worsley Building, Room 8-49, Clarendon Way, Leeds LS2 9JT, UK. l.k.fraser@leeds.ac.uk
authors.forename: L K
authors.initials: LK
authors.lastname: Fraser
authors.forename: J
authors.initials: J
authors.lastname: Aldridge
authors.forename: S
authors.initials: S
authors.lastname: Manning
authors.forename: S
authors.initials: S
authors.lastname: O'Leary
authors.forename: M
authors.initials: M
authors.lastname: Miller
authors.forename: R
authors.initials: R
authors.lastname: McCulloch
authors.forename: A M
authors.initials: AM
authors.lastname: Childs
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D005260:Female; D006738:Hospices / Q000706:statistics & numerical data* / Q000639:trends*; D006801:Humans; D008297:Male; D009468:Neuromuscular Diseases / Q000401:mortality* / Q000628:therapy*; D010166:Palliative Care / Q000706:statistics & numerical data / Q000639:trends; D006113:United Kingdom / Q000453:epidemiology; D055815:Young Adult